Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy.

INTRODUCTION/AIMS: Obesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD. METHODS: We surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD. RESULTS: Fifty-three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self-consciousness (71%), a negative impact on self-esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six-week weight management program addressing appetite management and screen time. DISCUSSION: Managing weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.

Does the Nutritional Intake and Diet Quality of Children With Chronic Kidney Disease Differ From Healthy Controls? A Comprehensive Evaluation.

OBJECTIVE: Children with chronic kidney disease (CKD) experience many obstacles to achieving optimal dietary intake. Dietary intake patterns remain unexplored or poorly described. This study compares nutritional intake and diet quality of Australian children with CKD to controls. METHODS: A food frequency questionnaire captured intake data and was compared to controls. Nutritional intake was determined using individualized nutrient reference values, and diet quality described using the Australian Guide to Healthy Eating and the Australian Child and Adolescent Recommended Food Score. RESULTS: Children with CKD (n = 36) and controls (n = 82) were studied. Children with CKD had lower weight and height z scores, but higher body mass index (P < .0001 for all parameters). Children with CKD had adequate energy intake, and excessive protein and sodium intake (336% and 569%). They were significantly less likely to meet requirements for vitamin A (P < .001), thiamine (P = .006), folate (P = .01), vitamin C (P = .008), calcium (P < .0001), iron (P = .01), magnesium (P = .0009), and potassium (P = .002). No child met recommended vegetable intake; however, less than half of children with CKD met fruit (44%), grains (31%), and dairy serves (31%). They were also less likely to meet recommended fruit and dairy serves (P = .04 and P = .01, respectively). Non-core foods provided 36% of energy, and although comparable to controls, was contributed more by takeaway foods (P = .01). CONCLUSION: Children with CKD have reduced nutritional intake of key nutrients and consume more takeaways than controls. Attention to increasing core foods, limiting sodium intake, and managing restrictions while promoting nutrient density appears necessary.

Scoping review of the dietary intake of children with chronic kidney disease.

BACKGROUND: Adequate nutrition is integral to optimal health outcomes for children with chronic kidney disease. However, no studies to date have summarised the existing knowledge base on the dietary intake of this patient group. OBJECTIVE: Analyse and summarise evidence regarding the dietary intake of children with chronic kidney disease and identify areas that require further research or clarification. METHODS: A scoping review of English language articles using four bibliographic databases and a predefined search term strategy. Weighted mean intake for each nutrient was calculated. RESULTS: Eighteen studies were identified (1407 children and 118 healthy controls). Data on socioeconomic status, underreporting of intake and binder use was sparse. Most studies collected dietary information using food records or 24-h recalls. Nutrient data was missing for many subgroups especially transplant and dialysis patients. Protein intake was excessive in all groups where data was reported and varied from 125.7 ± 33% of the recommended dietary allowance in the severe disease group to 391.3 ± 383% in the group with mild kidney disease. Fibre, calcium, iron and vitamin C intake was inadequate for all groups. For children undertaking dialysis, none met the recommended dietary allowance for vitamins C, B1, B2, B3, B5 and B6. Sodium intake was excessive in all groups (> 220% of the recommended dietary allowance). Limited data suggests diet quality is poor, particularly fruit and vegetable intake. CONCLUSIONS: This review has identified important subgroups of children with kidney disease where nutrient intake is suboptimal or not well described. Future studies should be conducted to describe intake in these groups. A higher-resolution version of the graphical abstract is available as Supplementary information.

Growth and nutrition in pediatric neuromuscular disorders.

BACKGROUND & AIMS: Little is currently known about the nutrition and growth outcomes in children with neuromuscular disorders (NMDs), and these are likely disease dependent. The aim of this study was to describe the range of nutritional issues in pediatric NMDs and identify similarities and differences in growth outcomes and nutritional needs in children with a variety of NMDs at different ages, with the goal of informing future services. METHODS: In this cross-sectional study we collected data on growth, dietetic interventions and nutrition-related issues in 160 children who attended a multidisciplinary clinic in a tertiary children's hospital, from February to December 2019. Children with significant weakness affecting mobility before the age of 3 years were clinically grouped into 'early-onset NMDs'. RESULTS: Across our clinic, 42.5% children had a history of chronic gastrointestinal issues, and 34.4% received dietetic care on the day of clinical visit. Children with early-onset NMDs had significantly higher prevalence of swallowing issues, gastroesophageal reflux, and vomiting, as well as higher frequency of dietetic consultations, high energy diet, swallowing assessment and tube-feeding, compared to later-onset NMDs (p < 0.05). In total, 49.2% children with NMDs had an abnormal weight, in which the prevalence of underweight (n = 24, 19.2%) was significantly higher compared to normal Australian children (8.2%) (p < 0.05). In Duchenne muscular dystrophy, over 50% children were overweight/obese. CONCLUSION: Among children with NMDs, there were many disease-specific nutrition-related symptoms, growth issues, and dietetic practices that were tailored to individual needs. Future studies should focus on measuring the impact of specific dietetic practices on growth and nutritional outcomes, as well as developing a precision medicine approach tailored to the individual nutritional needs of children with NMDs.

Parental Perspectives on Blenderized Tube Feeds for Children Requiring Supplemental Nutrition.

BACKGROUND: Families choose pureed blenderized tube feeds (BTFs) over commercial formulas for several reasons, including the ability to provide foods with natural composition, improvements in physiological outcomes, intimate experiences for parental nurturing, and the benefits that come with family inclusion and mealtime engagement. Although dietetic associations cannot, as yet, recommend BTFs, many families still choose to commence them. We aimed to better understand the demographics of these families, their sources of information and support, and the perceived benefits in a community setting to tailor the support we provide these families. METHODS: Dietitians at a pediatric hospital in Sydney identified 21 children receiving BTFs. Questionnaires that focused on child/parent demographics, parental knowledge, dietetic support, and symptoms before and after commencing BTFs were distributed. Food diaries were also sent. RESULTS: Twelve respondents returned completed surveys. Thematic analysis indicated improvements in general health, emotional and social well-being, and gastrointestinal symptoms. Respondents reported challenges with food preparation, nutrition adequacy, food storage, and prevention of tube blockages. Respondents primarily sought information online from social media and support groups. Likert scale analysis demonstrated positive outcomes for children receiving BTFs. Improvements were noted in general health, growth, nausea/vomiting, reflux, constipation, diarrhea, and social inclusion. Tube blockage was reported, however, and only changed from "never" to "rarely a problem." Food diaries were not detailed enough for analysis. CONCLUSION: Families continue to choose BTFs and report a range of benefits, accessing much of their information online. Health professionals should recognize this and openly provide support, guidance, and monitoring as appropriate.

Nutritional practices in pediatric patients with neuromuscular disorders.

Children with neuromuscular disorders (NMDs) may experience a spectrum of nutritional issues with adverse health consequences. This review summarizes the current understanding of nutritional care in pediatric NMDs, recognizing disease-specific aspects of nutrition alongside the challenges and needs in dietetic care. General or disease-related nutritional issues for children with NMDs include being underweight, overweight, or obese and having swallowing difficulty, gastroesophageal reflux, diarrhea, and/or constipation. Specific challenges in NMD nutritional assessment include alterations in body composition and energy requirements and difficulties in measuring anthropometry. Multidisciplinary dietetic intervention focuses on optimizing nutrient intakes to avert growth failure or obesity and managing feeding difficulties and gastrointestinal problems. Care guidelines are disease specific and vary in approach and detail. To promote best clinical practice across diverse settings, a standardized approach to assessing growth and nutrition across all pediatric NMDs is needed to direct optimal care centered on individual requirements. Future studies should focus on determining the prevalence of specific nutritional issues and the effectiveness of specific interventions among various pediatric NMD populations.